Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Just a very quick post today because I should be rushing about to get to the hospital for my second chemotherapy - I've got 50 minutes to shower, get dressed and get there so it's a bit of a tight timescale. Friday was a very difficult day, my GP was concerned that this constant, awful chest pain might be a Pulmonary Embolism, which was a very scary thought at the time. I was sent up to our local general hospital, not the fabulous place where my cancer is being treated where I get overwhelmed by kindness. On no, kindness is in a bit of a short supply at the general. They do their best, they don't mean any harm, but it felt like I was being processed rather than cared for. So nine hours of clunky, unjoined-up incompetence later, where they seemed to spend the whole day trying to open veins to get blood and put other stuff into me, because they don't have the necessary know-how to use my portacath. I have deep purple bruises all over the place due to their botched attempts, and they eventually managed to take blood from my groin - incredibly painful. I don't have a Pulmonary Embolism, thank goodness, but they don't really know what is causing this constant pain and breathlessness. So I came home with antibiotics, on a just in case basis, and I'm hoping that today, the the lovely hospital, they might be able to find the cause. Of course, my deepest dread is that it is the spread of the cancer.Anyone who knows how needle phobic I am (there is a post devoted to my intense fear on this blog "My Needle Phobic Past) may have some sort of an inkling as to how traumatic I found the whole of Friday to be. It has affected my whole weekend, and dark, depressing thoughts, despair, and complete self-pitying sobbing have just taken me over. I've had thoughts of calling a day to this whole cancer treatment because I just don't know how much more of this whole stuff I can take, and just letting nature take it's course. Of course I won't, I have far too much to live for and will continue to do everything I can to come out well the other side, but for the first time since this was diagnosed four months ago, I completely lost hope this weekend. My reasoning was, if I'm going to die anyway, why put myself through all this awful stuff and ruin my last few months? I kept busy though, and those of you who know how stressed out about the every growing mountain of admin will understand how delighted I am to have cleared 6 whole bits of it. I also watched Downton Abbey, which can cheer anyone up, even me at my worst.I don't know what today will bring, I'm wondering if they will actually go ahead with the chemo, or if they will try to find the source of this pain instead. I'd like them to do both! Once today is over, I'll get back to where I was, I'm sure, and be bubbling all over again with gung-ho optimisim that this cancer is on it's way out, because I really can't bear any more misery. My hair now looks ridiculous - but I need to show the oncologist how it is to prove that the last chemo actually worked! So maybe we'll celebrate getting through today with shaving it all off so I can get down to the serious business of looking fabulously gorgeous in my new wig from tomorrow!

The hair has to go, and very quickly. The Lovely Mr Lovely has sent me a copy of a letter he has sent to my equally lovely Chemo guru, suggesting that, since I seemed to have very little in the way of post-chemotherapy symtoms, perhaps I was under-dosed. Everyone I've told about this seems to think it's hilariously funny, but I really don't want a double dose next week, so I need to be a bald as a coot to prove that my little cancer cells have been sufficiently ravaged by it.

So, everyone at home is completely grossed out by my new addictive habit of tugging handfuls of hair out. Personally, I find it fascinating, it's just so wierd to run my hands through my hair and loads of it coming away. This has been going on now for two whole days, and despite the fact that I feel like I've pulled away enough to stuff a couple of cushions, I actually still look like I have a whole head of perfectly copious hair. I have to wear a hat when I go out now, just in case it all suddenly decides to go out, and my kids won't let me cook their food at the moment in case I moult all over their dinner. So poor WM is on chef duty in our kitchen this week, which beautifully lets me off the hook.

Losing your hair is supposed to be one of the most traumatic parts of having cancer, so I've surprised even myself by how much I'm enjoying it so far. But that's the funny thing about this disease - things you think will hit you hard just don't, and things you think you'll take totally in your stride can send you over the edge into a dark black pit of misery. Both can happen too; maybe in a day or two I'll find the whole bald number heartbreaking, but I'm nowhere near there yet.

I heard a theory about cancer patients this week, that they fall into two distinct catergories, the Tiggers and the Eeyores. I think I'm mostly Tigger with the odd moment when Eeyore pops his head up and overwhelms me with misery, but luckily that doesn't happen often, and when it does, it doesn't last very long.

This last week, the misery has mostly been miles away. It's been a lovely week, I've had absolutely no hospital or any other appointments, I've felt reasonably well - certainly well enough to go out to dinner three times and to engage in a touch of retail therapy too. I've even driven the car for only the second time in three months, and the mastectomy scar is sufficiently healed to tolerate a seat belt. I've experimented with new underwear and I've found a bra make that holds the falsie in place so securely and in the right place that I almost forget that it's not my own one. WM let me help him choose a new car, I've spent stacks of time just chilling with all three of the children, catching up with friends, and just feeling relatively normal for the first time since early May. Downton Abbey's return is just the icing on this week's cake.

I wish I could shift the procrastination though. The to do list gets longer and longer with each passing day, and the house gets more and more untidy and dirty. I have energy galore for about 10 minutes in a burst, then I just flop. The admin and paperwork is now more of a mountain range than a single mountain, and if I'm not careful something that I really should have done but haven't is going to turn round and bite me on the bum very soon. I get to the stage where I don't even know where to start, and the starting is scary, because once I explore that pile I'll find all sorts of reasons to be consumed in guilt, and feel pants for the rest of the week.

Going back to chemo symptoms, I now don't think I got away completely scot-free. The first 10 days I was comprehensively washed out, and although the consuming gallons of water and fasting beforehand did the trick in terms of stopping me feeling sick, even walking from the kitchen to the front room seemed like a marathon. Eating is another marathon, I just don't register hunger, and the weight is falling off, not quite as quickly as the hair, but still pretty good. As well as the hair disappearing, my mouth feels like someone's taken sandpaper and razor blades to it, nothing tastes right, even my staple, my precious cups of tea, taste like the milk went off last year. The chest pain that arrived a few days after chemo hasn't subsided yet, and in a bad moment, despite the medical reassurance I've had, I convince myself that it's the cancer spreading. Hopefully it's just a little know rare side-effect, but I really wish it would bog-off somewhere else.

Somehow I've got to find the wherewithall to sort out the paperwork and the house. I bought myself a new present which arrived today, a Dyson vacuum cleaner. It's still in its box in the hallway, hopefully giving the impression to any new visitors that, OK, the house is a tip, but I'm just about to sort it out. We all have special talents, and mine definitely isn't housework, but once I get going with the Dyson, I'm hopefully going to be galvinised into action, if for no other reason than to clear up all my fallen hair. Otherwise my kids will never eat at home again.

My GP has summoned me to see him later this week, and I haven't a clue why, but something about wanting to talk about my current hospital treatment. Hopefully they haven't decided that my family has single-handedly bankrupted the NHS and I'm never to darken their doorstep again, but I'll let you know. I'm due to see their new trainee GP, who the receptionist enigmatically told me "He's very popular with the ladies". Maybe another Mr Lovely in the making? I'll let you know about that too.

I've got a few more days before Chemo episode 2 next week, so there's time to fit a lot of stuff in. Paperwork and cleaning, obviously, but also maybe a few good books and a some quiet nights in watching TV. Feeling fairly well, apart from this constant chest pain, is such a strange, but lovely, experience after all these months of feeling pants, that I've almost forgotten how to relax and enjoy. I'm sure, with a bit of practice, I'll get very good at it again soon. And if I don't, then I'll obviously need to practice it even more.

Thursday, 6 September 2012

I am just hopeless at being ill, I really don't have the patience for it. Most of the time I almost forget that I am, in fact, quite seriously unwell, and get totally absorbed in everything else. Most of this stuff can't really go into this blog because it usually involves other people, and I really don't think it's fair to start telling other people's stories here. Whenever I do talk about things I am very careful to use pseudonyms to protect their privacy, but the biggest slice of my life revolves around my three kids, and being teenagers they would cringe with embarrassment if I really spilt the beans on the really best moments of our family life. So anyone reading my blog regularly probably gets the impression that my cancer is the only thing I ever think about, which really isn't true. One of my biggest fears in all of this is that I will become a "cancer bore" and only be able to talk and this rather irritating, life-interrupting, annoying little menace. Yes I've got cancer, but I also have a life, and I'm not going to allow cancer to claim more than a very small corner of it.

Or at least that was my philosophy until Monday, Chemotherapy Day One. Somehow, despite all the tests, scans, major operations and investigations, there is something iconic about having chemo which makes the cancer feel much more real. The chemo itself didn't go badly at all. However, I found the day to be quite stressful, not helped by a first botched attempt at accessing my Portacath which was both traumatic and intensely painful. Then I was sent off for half an hour while both calming drugs and magic cream was given time to work. The second attempt was successful, and much less painful. By the time the kit had been attached for a minute or two I honestly couldn't feel a thing.

The chemo itself was given much later that afternoon, and I even managed to get home for a couple of hours while we were waiting for the drugs to be prepared, still wearing the kit. Chemo itself was slowly syringed into the port in several different syringes, taking about half an hour, and it was so amazingly easy with absolutely no sense of feeling of anything happening at all. Throughout I just sat and chatted and laughed. Then it was time to come home. I've read about all the side effects, and I knew that they usually kick in a few hours later, but I waited, and waited and waited, and absolutely nothing adverse happened whatsoever. Yesterday too, nothing at all. Maybe the theory with the mice and the water and the fasting had worked, but I thought I'd sailed through it like a breeze.

Until today, when it all went wrong.

Imagine pulling the plug on an overflowing bath and watching the water drain away. Well that's what it felt like had happened to my energy. Even reaching a few inches to where a cup of tea was felt like climbing Everest. Eating was just beyond me, and talking was far too complicated. If you know me, you would understand that that must be really serious! More frightening though, is that I've developed a really acute pain just under the mastectomy scar, and it hurts to breathe. So do I do the sensible thing and tell anyone, or ring the hospital for advice? No, of course I didn't. Instead I just did what I hardly ever do, and convinced myself that this was it, I was definitely going to die, possibly in the next few hours, and that the cancer had definitely spread at around the same rate as the speed of sound, and that it had taken root in both my lungs and ribs, and my time was up.

I'd invited a friend around to lunch, but I just didn't have either the mental or physical capacity to make any. She and WM together worked out that I wasn't at my best, and ganged up together to make me tell all. Have you had a look at it, they asked? No, of course I haven't. So I did. Then they did. There is a large, flat lump about the size of my palm just by the scar. Then the themometor was found, and yes, I had a temperature. Not a life-threatening one, but enough to be a concern when you're on chemo. So it looked like my speed of sound cancer spread was actually a speed of sound infection brewing, not great, but better.

I didn't have much choice, they made me phone the hospital. The specialist nurse told I spoke to told me that they wouldn't take any chances, I'd have to come in immediately, and be put on intravenous antibiotics as an inpatient for the next several days. Then she said they might not have a free bed, so I may instead have to go to our local general hospital - and I really don't like that place at all. I was told to pack a bag, and a doctor would ring in the next few minutes. Once you're on chemo, infections are a very big deal. In a few days time I won't have any white blood cells to fight any infection, so these things have to be dealt with really quickly. I had time to burst into tears, write a list of what to pack into a bag, pack the wretched bag and even worry all my friends on Facebook before the doctor rang back. Brilliant news. It can wait until tomorrow when I have a scheduled appointment booked with Mr Lovely, who I know will sort it all out for me. It could well be that I'm kept in tomorrow, but you have to be thankful for small mercies, and at least I stayed home today.

I then did what I never do, and perhaps what I really should do a lot more often. I went back to bed for three hours. When I got up again, I felt a thousand times better, and the temperature had gone. The pain and the lump are still there, but hey ho, you can't have it all, and at least I didn't die of speed of sound cancer today after all.

Sunday, 2 September 2012

Yesterday I had my first "low" day in ages, trying to get my head around Chemotherapy starting tomorrow. It's simpy terrifying, but today I'm much more upbeat, and mingling with that sheer terror is a real sense of excitement too. The next four months are unlikely to be my best end to a year ever, and the likely side effects are enough to invoke nightmares, but the drugs themselves will race around my circulatory system hunting down and destroying any stray little cancer cells that might have escaped before my tumours were surgically removed. If it does its job properly, that just has to be a really good exciting outcome.

The bad news is that in two to three weeks I'm likely to be totally bald. I've got horrid hair, and it's never once in its life given me a good hair day, so I'm really looking forward to seeing the wig lady - whatever she come up with for me is bound to be better than my real stuff. The other miserable things about chemo is that it can pile the weight on - up to 25 pounds in some cases, and it can cause your body to age by about 10 years. Bald, fat and haggard might not be the best look ever, but it's a far better look than being dead.

Cancer cells are far busier than most cells in the body, multiplying really quickly. Chemotherapy has been designed to seek out and target any cell that is extra-active, so it is pretty effective as an oncology treatment. However, other cells in the body that also multipy quickly are also wiped out by chemo, and as well as hair-growth cells, these also include the cells forming the lining of your mouth and digestive tract, your finger and toenails, as well as your white blood cells. You can feel the effects of this about 10 days after getting chemo, and can develop very painful mouth sores and also have virtually no resistence to infection so you can become life-threateningly ill even from some relatively innocuous infection like a headcold. That's all on top of the symptoms that can lay you out flat for the first 4 or 5 day, when constant vomiting coupled with total and utter exhaustion can try and spoil the first week.

There is no choice, the only choice I have is how I can appoach it. Deep breath, jump in the deep end and swim like crazy while you think about all the amazingly brilliant things waiting for you on the other side of the ocean, and at the same time still having the resources to notice the beauty of things that come your way during that swim for your life. That's my ideal approach, but whether I'm mentally and emotionally strong enough to be that upbeat all the way through the next four months remains to be seen. I have a feeling there are likely to be days when despair and hopelessness threaten to drown me along the way but I'll just have to take it a day at a time.

I'm still doing really well on keeping up with the healthy diet and altogether I've lost just over 7 pounds in weight which I'm really proud of. Lots of home cooking with fresh organic ingredients - bread, sorbets, soups, stir-fries and salads with hardly a chocolate in sight. (OK so there was a tiny moment with a packet of maltesers). When I'm not cooking I'm sometimes on my brand new exercise bike - I've now used it everyday for over a week. Yes really, I have. I've also been cleaning and reorganising the kitchen this week to find spaces to accommodate all the new ingredients I'm using. Homemade muesli is delicious, but finding places to put all the jars you need to hold the stuff that makes it up is such hard work that it's enough to make you want to call it a day, and go back to the Rice Krispies with lots of sugar on the top.

The other breakthrough I've started to make is about my mastectomy scar. It's about a month old now, and before surgery I thought I had come totally to terms with the whole idea of losing a breast. I thought I was completely philosophical about it, and would just be glad that that big tumour was gone. So I've been really thrown by how badly I've reacted to it. It is just so overwhelming to see that huge scar where my breast used to be. The level of disfigurement is simply shocking. I got to the stage where I just tried to tune it out - every time I accidentally glimpsed at it in the mirror, or accidentally touched that area, I just couldn't stop crying. Then I'd go about beating myself up for being silly and shallow and vain, but I think it goes much much deeper than that. So this week I have made myself look at the scar at least twice a day. It's been hard, but it is getting easier. I'm supposed to be smothering it in moisteriser, but I can't quite go that far yet, but hopefully it won't be long. Calling it my "sharkbite" has somehow really helped, but the coming to terms with it all to the point of total acceptance is going to take a long time, and maybe it will never happen.

I've done a lot of reading about chemo as you can probably imagine, and one research study has shown amazing results in mice that were starved for 24 hours beforehand. Their survival rates rocketed, and they were barely touched by the side effects as well. They drank stacks and stacks of water but didn't eat anything. Lots of other studies show that drinking gallons of water in the previous 24 hours significantly reduces the side effects too. So OK, I'm hardly a mouse, and I hate being hungry, but nevertheless I'm going to give it a try.

So it's going to be a very odd little week or two, followed by a fairly strange few months, but I now know plenty of people that have done it and come out the other side. Some may be fatter, hairless and looking as old as the hills, but they are alive, and at the very end of the day, that's really all that matters.

Subscribe To

Follow by Email

About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.